Friday, December 25, 2009

The Best Christmas

It was a really wonderful Christmas, full of traditions and joy. On Christmas Eve, we all got ready for church and made our way to the service. Charlotte was dressed in her most adorable outfit (as usual). We even opened a few presents before church. Roger and I are horrible about waiting. After church, we came home to what has become our "traditional meal" of pizza and wine. A nice, low-key, easy (and yummy) way to celebrate the day. Once we had all eaten, it was time to open presents. The family presents were opened one after another and we marveled at ALL the stuff for Charlotte. There were, as usual, about twice as many presents for Charlotte as there were for Roger and myself combined. Tis the reason for the season, eh? It's all about the kids.

Once all the family presents were opened, it was time to settle into bed. Charlotte got to sleep easily so Santa could do his job. When the morning dawned bright and early, we took Charlotte into the living room to see what Santa had left. We were excited to share in her glee as she opened the "pony phone" that she had been requesting for the last four months!

Yes, it was a wonderful Christmas.

Last year. 2008.

So much has changed since then. At that time, we were oblivious to all of this. Unaware of the year that lay ahead. Unaware of the monstrous tumor that was already a substantial size and growing in her brain. Charlotte was a "normal" kid. Singing, dancing, working on being potty-trained, playing with friends, already beginning to read. She was doing all the things that preschoolers do. For us, cancer was something that happened to other people. Other families. Cancer was the thing that we fought through walk-a-thons and annual donations to St. Judes. We didn't know we would very soon have to go nine rounds in the ring with Cancer...only to be knocked down over and over throughout the year.

This Christmas, on the other hand, has been pretty sucky. (To put it bluntly.) Despite everything that our network and friends have done for us (and there have been wonderful things coming our way for which we are MOST appreciative), it is still just a difficult holiday.

It's challenging to be joyful.

We did not engage in many of our regular traditions: the annual Christmas letter did not go out (but you do get daily blog GREEN of us!); we did not participate in the regular gift exchange to family and friends (although we have been the recipient of some very healthy and very yummy food and wine); we did not attend Christmas Eve service although we did Skype into the service at my home church in Daytona Beach where Aunt Jamie was singing (beautifully, as usual).

I realized something last night as I was finishing Charlotte's late evening medications and preparing to fall asleep on the trundle bed next to her: in many ways, she is already gone. She may be breathing and eating and even responsive to our stories and queries, but the Charlotte that we knew and loved...her personality and her spirit and her voice are all but gone. She cannot walk. She can barely talk. She cannot interact with us as she could even two weeks ago.

Even the most innocuous things will make me sad. I was watching a Rice Krispies commercial where the mom and two kids are decorating rice krispy treats for the holidays. The girl in the commercial is around four. She is talking and decorating and participating in the activity. And I think: Charlotte will NEVER do that again. She couldn't do it now if she tried. These are the things that make me sad.

I went to work yesterday and it was a mixed experience. It was nice to see some of our regular customers and I was able to use the time to get caught up on some very important RNR work. It also gave me an opportunity to get out of the house. All good things. Then, you get the random person who comes in who knows about Charlotte's situation but has not kept up with the blog posts and perhaps has not seen us in a few weeks or months. They say things like, "So is Charlotte excited about Santa?" or "So how's that pretty little girl of yours doing?". They obviously don't know. And how do you tell them? Do you ruin their Christmas? Do you say, "Well, she's in the final stages of her life right now and we don't really know how many days we have left with her. She is completely bedridden and hooked up to medications constantly and she's going to die. Other than that, we can't complain."

Yeah, there's no right answer to those questions. You just kind of smile, nod your head, say something obscure like, "She's ok" and move on. But it's comments like that which will smack you back into reality and make your heart ache.

I am ready for this year to end. More importantly, I am ready for Charlotte's life to end. I will miss her when she is gone. She will leave a huge hole in our lives and in my heart. But her life as we knew it is already over and this has been the most difficult year of MY life. I hope this post doesn't ruin everyone else's Christmas. As usual, I am seizing the opportunity to be brutally honest.

Before I close, I will just piggyback on Roger's previous post about the Butterflyaway event on December 27th (and probably again on January 2nd). I think this will be a great opportunity for parents to help their kids understand what is happening (and what will happen) to Charlotte. We hope that as many people who want to attend can make it. If you cannot make it and still have questions about how to handle this with your kids, please let us know individually. We have a lot of resources through Noah's Children and ASK that can be of service. Also, if you as a parent want to attend without your kids just so you can ask your own questions or figure out how to share this information on your own, that is ok too.

A Blessed Christmas and a Peaceful New Year to one and all.


  1. You and Roger are so brave. I know that 2009 has been horrible for you all. I wish you much Peace and Love in 2010. I am thinking of you every day and sending love to Charlotte and to you and Roger. May you all find peace soon.
    Barbara Lewis

  2. All your family and friends are trying to share this with you - which is an impossible thing to do and we so appreciate your sharing your deepest thoughts and feelings. I am sure all of us just wish we could make this go away - not to be. You both have taught all of us, young and old, so much about facing something like this with such grace. With much love from Illinois.

  3. Hoping for mini miracles today that bring you peace and comfort. Thank you for sharing with all of us - your strength is immense, though you may not be able to see it right now. ((hugs))

  4. Rog,Rachel& CJ,
    I have so many mixed emotions today.I know I need to put on the happy face for everyone here in NM,but it is almost impossible.I find so much strength in your posts and your outlook on the situation at hand.You are comforting me far more than I could ever do for you!! I love you immensely and constantly have you in my thoughts.

    Uncle Terry

  5. CJ will be healed and free again, she will run, dance and giggle just as all little girls should. She will rejoice in the Lord and all His divine glory. Our one goal in this life should be eternity in Heaven; she will meet that goal before any of us. She will be missed and your separation anxiety will be immense, but she will be waiting patiently for you; and, she will be healed.

    Heavenly Father, I petition you for your never ending mercy and grace. Cast down upon Roger, Rachel and all of the family, ease their burdens Father. Heal their broken hearts and restore them fully. Give them understanding, peace, patience and strength to carry on when the pain becomes so unbearable. Let them see your glory Father, make it clear why their precious angel had to endure this fight. Cast out all doubt and fear, fill them with truth, knowledge and wisdom. Let them honor you all the days of their life and give unto you all the glory, power and honor you so lovingly deserve. We exalt you o Lord, we come to you in this time of grief and despair. We seek your guidance, your grace, your love and attention for you are the great healer and redeemer! Merciful Father, be with them, walk with them, hold them and carry them, let them see your face and feel your touch of mercy. All the power and glory and honor to you now and forever. In Jesus' precious name I pray, Amen.

    Jennifer (friend of Stevie)

  6. I pray you find peace in this song...find your rest in the Lord.

    MY BELOVED by Kari Jobe

    You're My Beloved
    You're My Bride
    To sing over you is My delight
    Come away with Me My love

    You're Beautiful to Me
    So beautiful to Me

    Under My mercy
    Come and wait
    Till we are standing face to face
    I see no stain on you
    My child

    You're Beautiful to Me
    So Beautiful to Me

    I sing over you My song of peace
    Cast all your care down at My feet
    Come and find your rest in Me

    I'll breathe My life inside of you
    I'll bear you up on eagle's wings
    And hide you in the shadow of My strength
    I'll take you to My quiet waters
    I'll restore your soul
    Come rest in Me and be made whole

    You're My beloved
    You're My Bride
    To sing over you is my delight
    Come away with me my love

  7. I have wanted to say this for a long time: you, Rachel, are a writer of true eloquence (nuthin' against Roger...); day after day, month after month, I have read and been moved by your honest and original prose. Though we have never met, I cannot imagine a better narrator for this story, sorrowful though it may have been. Thank you SO much for giving us so much of yourself this past year, and for doing it so eloquently -- no matter what dark times lie ahead for you, this reader looks forward to hearing it from your voice. Keep writing always, please.

    Todd Munson

  8. As I read your post, anxious yet frightful of what it says today, I continue to be drawn to tears yet filled with such a warm presence. To think that your words would ruin a Christmas, in fact I find just the opposite in the words I read...I awed by your spirit, your love and your devotion to your family, dear Charlotte and the all of that, I find the true spirit of Christmas. I am drawn to your family , though, I don't know you. It is teaching me to appreciate the gifts in my life, even those moments and situations that don't seem like gifts. You have had the opportunity to live amongst one of God's angels sent to you for reasons beyond our thoughts and all already recognize how special that presence has been...thank you for sharing it with us and helping us all see what is really important! God Bless you all!

  9. I'm thinking of you & praying for you. Just wanted to let you know.

  10. Dear Rachel,

    I know that this time is hard for you and you are an amazing mom that is helping so many. Your honesty is going to help you learn and move forward in life. I know what you are saying as I have lost a daughter although not in the same way, I can still relate to your comments on how to respond to people. It is still hard for me today even 4 years later how to tell people that don't know. You will know when it is right to share your story with someone and you never know how it will change that persons life. I think of you and CJ everyday and will keep praying for peace in your heart.

    A poem from a mom who has a daughter in heaven to a mom who is waiting for her daughter's angel wings.

    We Thought Of You Today

    We thought of you today,
    But that is nothing new
    We thought of you yesterday
    And will tomorrow, too.
    We think of you in silence
    And make no outward show.
    For what it meant to lose you
    Only those who love you know.
    Remembering you is easy,
    We do it everyday.
    It's the heartache of losing you
    That will never go away.
    If I could have a lifetime wish,
    A dream that would come true,
    I'd pray to God with all my heart
    for yesterday and you.
    A thousand words can't bring you back;
    I know because I've tried.
    And neither will a million tears,
    I know because I've cried.
    You left behind a broken heart
    And happy memories too.
    I never wanted memories,
    I only wanted you.
    An angel In The Book of Life
    Wrote down my child's name,
    And whispered as She closed The Book
    "Too beautiful for Earth".

  11. Rachel,
    There are no words to adequately express how profoundly your struggle has touched me. I found out about CJ through a coworker just a couple of weeks ago and my prayers have been a constant with you since. I know that you and Roger have already completed your life's mission - as parents to this beautiful little soul. How fortunate she was to have been given to you! On Christmas Eve, as we prayed for the sick, Charlotte was the second name read, as has been for weeks. My daughter and I looked at each other and realized that the precious face we have seen on your blog is the one we have been praying for for quite a while. I hope that the knowledge that so many are with you in spirit will help lift you through these next difficult days.

  12. Rachel,

    You don't know me, and I don't know you, but we have an awful lot in common. Dr. Anna is the first thing I found that we have in common. She is wonderful. She posted to our now annual Christmas blog in honor of our son Theo who died of a brain tumor Feb.20, 2006. We do a Christmas Stocking blog in his honor each Christmas. We ask friends and family to post random acts of kindness done in Theo's honor and in honor of their own loved ones who have died at She posted her visit to your Charlotte as her act of kindness and included your blog in her message. I visited and found that we have that particular kindness in common--she also came to our home to do regular adjustments on Theo while he was dying. Like you, I too kept a blog throughout Theo's illness and after his death Another commonality is that we also received services from Noah's Children--they were amazing.

    Your Christmas post sounds very much like something I wrote myself. I am glad you are brave adn honest. It's very hard to be that way sometimes. But needed, I think. I am so sorry that you and Charlotte--your whole family-- are going through this pain. Our journeys are different, but I understand the pain, the exhaustion, the heartbreak, so many, many things that are so difficult to even put to words.

    My thoughts are with you as you and Charlotte navigate this very difficult piece of your journey. Please feel free to contact me if you'd like to talk to another mom who's been there--andis still there--just at a different point on the journey.

    Many wishes for peace and comfort to you and your family this season.

  13. Hi Rachel,

    Continuing to pray for all of you. Not presuming to know you or what your are going through, but you go ahead and be honest with your feelings. It is definitely OK. May you find peace and strength in the Lord.

  14. Rachel and heart is with really is...I only met Charlotte a couple of times at the clinic...but she is a true angel. I have guilt that my baby girl is getting better while yours is not... I think and pray for you everyday..I think Charlotte must be Abbie's guardian angel...they both love purple. When I see Abbie smile...I see Charlotte too...I don't know what else to say...other than.

    Much Love,
    Mary Ann Waters
    Abbie's mom

  15. Roger, Rachel and CJ:
    We are always praying for all of you! What amazing parents you are! CJ is truly an angel and always looked so cute in her pink and purple! I met you guys in the PICU almost a year ago and the strength and courage you as a family have displayed to others is amazing! We are praying for peace and comfort to lift all of you through the days ahead!
    Tabitha, Brandon and Family

  16. I know there is absolutely nothing I can say to provide you comfort or to ease your pain. I have been continuously amazed by the strength and faith that you and Roger have had to get through this experience. Just know that you ALL have touched thousands of lives and truly have made an amazing impact in so many ways. That in itself is a gift. My thoughts and prayers are with you and your family! - Kate, Joe & Emma

  17. I just want to tell you that your family and Charlotte's story have touched my life. I think of the three of you every day and I feel you have made me a better mother, wife, sister and daughter. I don't think there are any words of comfort I could give you but please know that you are not alone and that we are all grieving with you.

  18. I don't know you, but I am a fellow Richmonder and I have been reading your story for awhile now. As a mother I can not imagine what you are experiencing, but know that you bring great inspiration to me. I do not have words of comfort, but know that you are not ever alone. I pray the Lord brings all of you peace and comfort. Your honestly will soothe some of your pain, don't be afraid to share it.

  19. Rog, Rachel and our beautiful Charlotte,
    First off, I love you guys much more than words can say, or than you will wever know. Second, I feel so privildged to have Charlotte as my niece. I know you all know what a special person she is, but I want you to know that WE also see what a gift she has always been to our family! What a blessed family we are. Please go over to her and hug and kiss her for me, then please hug each other for me, too! I love you! Lynn


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